One Story, Told in Glimpses: Special Needs Caregivers of Note
Caregiver's of Note

Caregivers, I listen.

I hear the stories you share on your blogs: I am an anonymous reader, filled with compassion and concern. I may read your words but I hear your voice.

You might be fortunate enough to have support “off-line” or you might not be. Whatever the case, just know, that we, your blog readers, have your back. We’re that fan going nuts on the Skycam when you share your good days with us. And after the bad days? We’re that friend with ice cream and movies, knocking at your door. We’re always cheering you on, always saying a prayer.

We may not speak up—I rarely do. Often, words fall short. Often, I have no similar experience of my own to relate. But I get it, on my own terms. And the empathy I have is probably nowhere near the empathy of those who are struggling with the same experience.  Regardless, know that it is there.

By now I hope you know this:

You’re not alone.

I’ve done the reading, I’ve heard the stories and I’ve concluded: It’s true, you’re not alone. I collect them, hoping to trade them along the line, with someone who feels desperately alone. Who feels like no one understands. It’s then, that moment. That’s when I will point them in the right direction: to a story like their own.

Although awkwardly framed in that clunky, techno-sounding word, blogs are fundamentally one story told in glimpses. Below, I point you to three of those stories. Three glimpses into another life. Whether or not you share the same set of circumstances, you might find the feelings to be the shared experience. And just knowing that someone else feels the same makes a world of a difference.

Calvin’s Story

In an effort to raise awareness about epilepsy, Christy Shake writes every day. With ground-shaking honesty and profound insight. Christy uses photographs, quotes and her experience to weave together the story Calvin is unable to tell for himself. But for as much as it is Calvin’s story it is also her own story (and her husband’s) as a caregiver. Take a glimpse and—my god—how much you’ll learn.

The Caregivers’ Living Room

And that’s where you’ll be, right in Donna Thomson’s living room. Here she’ll share her experience as a caregiver for her son, Nicholas. This level of personal honesty appropriately segues to the big-picture discussion about the rights and needs of marginalized families in society. Donna is an advocate through and through: for her son; for families; and for caregivers at large. The Caregiver’s Living Room invites you to look at caregiving on a scale, from family to population.

ASD Dad

In beautiful and captivating posts, a father chronicles life with his wife and twins, one of who has autism and a rare lung disease. Poignancy and honesty are notable qualities of ASD Dad’s blog. These glimpses into life with a special needs child feel like hands cupping sand—blink and it will slip through your fingers. The reader steps in and the reader steps out. The joys and struggles of this kind of care, for a reader, resonate only as long as a reader lives in them. For the caregiver, they are life lasting.

Calvin's Story, The Caregiver's Living Room, and ASD Dad

Written by Alexandra Axel
Alexandra Axel was the first founding staff member at The Caregiver Space. As a New York native, Allie grew up people-watching and story-collecting, eventually pursuing her undergraduate degree from The College of New Jersey in sociology and creative writing. At The Caregiver Space, she worked with social media, graphic design, blogging, and program development to brand and grow an online community composed of, and focused on, caregivers. From the seedlings of an idea to the thriving community that it is today, Allie was there from the beginning to support the evolution of The Caregiver Space. Allie enjoys writing poetry and short fiction, devouring books, biking, crafting, urban agriculture and imperfectly cooking. She currently resides in Brooklyn with her pup, Hen.

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